TMS Takes the Next Step: Representing Our Community at the NORD Registry Meeting By Shonna Snyder, Ph.D.On October 19, 2025, I had the privilege of representing The Mast Cell Society (TMS) at the National Organization for Rare Disorders (NORD) Registry Meeting in Washington, D.C. This marked TMS’s first time attending the event, a meaningful milestone as we officially begin our own registry journey. The idea of developing a patient registry has been a strategic initiative for TMS for nearly a decade. Over the past two years we have begun to make major progress bringing together patient advocacy partners from across the globe, including UK Masto and TAMS, as well as clinicians, researchers, and industry stakeholders. We are now at the point of building the registries infrastructure through this NORD program and it was both exciting and humbling to take this next step on behalf of our community. The meeting brought together NORD member organizations with established registries as well as those, like TMS, currently onboarding to the NORD I AM RARE Registry platform. It was inspiring to hear from groups that have already harnessed their registry data to drive real-world impact. For instance, the Prader-Willi Syndrome registry contributed vital data that helped support FDA approval of a new treatment, a powerful example of how collaborative data collection can accelerate progress for rare diseases. Throughout the day, I connected with several other organizations in the onboarding phase, sharing lessons learned and exploring how we can each best serve our patient communities. A highlight of the meeting was NORD’s announcement of the IAMRARE App, which will soon provide patients and families with an easy way to participate in registry efforts. Once the TMS registry launches next summer, individuals affected by mast cell diseases will be able to access the app through the Google Play Store or Apple App Store. Overall, the meeting reaffirmed that partnering with NORD is the right path for our registry initiative. Their expertise and infrastructure will help ensure that our registry becomes a powerful tool for advancing research, improving care, and ultimately finding better treatments for those living with mast cell diseases. To learn more about the broader discussions from the meeting, visit From Voices to Breakthroughs: Celebrating the 2025 NORD Breakthrough Summit – National Organization for Rare Disorders And stay tuned in the coming months for more information about our efforts to develop the Mast Cell Disease Patient and Provider Registry.
